MegRie

I don't know if any of you saw the rediculous post by buzzfeed, but it was enfuriating! I'm not going to include the link because I refuse to go back to it. I believe they were puposefully inflamitory in order to drive traffic to their site! They did, at least recognize Celiac as a real problem, but said that for anyone else who had a gluten intollerance it was all in their head! You guys all know how much of a struggle it is to be gluten free. All of you understand how exhausting it is to have to defend yourself around every corner, because someone thinks they innately know more than you about what it means to be gluten free. I'm sure you have all been accused of being unhealthy because you don't eat gluten (what the heck is that even about!!!????). I'm saying all of this, because (sometimes unfortunately) I can't just sit back. When things bother me this much, I have to do something. I know there is already a celiac awareness month (or week?) but it is in May.

Thanks! I have been trying to be more vigilant about the probiotic, but I'm still not great at it. I probably need to get an actual supplement instead of just trying to eat Kiefer. I don't konw much about Dr. Osborne, and I haven't had the chance to really do research on what he was saying, though some of it did resonate with me, so I wanted to see if others felt they had the same issues. I will read the article you shared as well. Thanks for all the advice!

So do you think that it is more common with people with celiac disease to have intollerances to these other glutens, and in that case, do you feel they can cause leaky gut, or any sort of damage to the intestines besides the villi?

I have celiac and have been gluten free for about 3 years now, and my aunt recently went gluten free, after a string of health issues. The thing is I still struggle with fatigue quite frequently. I feel waaaayyy better than before going gluten free, but I still don't ahve a ton of really good days. My aunt has been gluten free for about 6 months and is stil having some issues (she just started having tremors for one). She has been doing a lot of research and came across a video (link below) with Dr. Peter Osborne who says that there is a gluten protien in all grains, such as corn and rice. He says that a large number of people with celiac still have issues because they are eating these things. Last week I decided to cut out all grains, cut back on sugars, and not eat any beans (I added a little bit of paleo philosophy into last week). The thing is I felt great. I had a lot more energy. Then the last I ate a gluten free meal at P.F changs and a gluten free meal at Red Robin. After P.F Chang's I felt sick and kind of nauseated for about an hour. After the RR meal I got REALLY tired (the type of tired I deal with where it feels like I've taken benadryl or something). So my quesiton is this... What are your thoughts? Maybe this is why so many forums talk about corn problems!? Video link:

Nicole, Have you had any luck with figuring out what was making you so tired, or how to have more energy. I've been gluten-free for about 3 years now. Overall I feel so much better, but over the last few months I have been extremely tired again. I started taking vitamins and those seem to be helping, but I feel like fatigue is a pretty consistent issue with me.

I have been thinking about this a lot lately. I have spent many years working with people with special needs and am continually finding links with gluten sensitivity and/or celiac disease. For example many people with Down Syndrome have Celiac Disease. I also read recently that women with Celiac Disease are more likely to have children with Autism. I just finished reading a book, "Pretending to be Normal", about a woman who has Asperger's Syndrome but did not find out until she was an adult. It got me thinking about "weird quirks" I've had throughout my life. When I was a kid I hated wearing socks because "the seams hurt my feet" and to this day I literally can not stand the sound of people rubbing their feet on the carpet. These could be linked to Sensory Perception Disorder. My mother told me that when I was young I would throw the worst tantrums for hours over what seemed like absolutely nothing and that she could not get me to stop. It makes me wonder what link is here that we are missing, and if we could figure it out we might really be onto something. Also, a little off subject but what about scoliosis? Could this be due to celiac disease and malnourishment? I know that is a whole lot of slightly disconnected thoughts, but it's just really been on my mind lately.

Hi, I know that this can be a sensitive subject, but I just wanted to suggest that you may want to finish getting a diagnosis for your son. I work with adults with special needs and those who were not diagnosed before adulthood are not eligible for some types of financial aid! At least at this point in time. :/

I have this same problem. I keep thinking if I try new things I will find something that won't make me sick... For me it is not so much the stomach thing as it is a headache, my stomach doesn't hurt but I do throw up and just feel terrible. I think I'm just going to give it up. I'm tired of not feeling good.

I have been Gluten-Free for about a year and a half now. Before going Gluten-Free I had no energy and was feeling depressed. After going Gluten-Free I had a complete turn around, though I would get to feeling bad here and there (usually due to accidentally eating gluten). Recently, however, I have had no energy--I don't even want to do the things I want to do. I also feel like I am constantly battling with my mood, frustration, anxiety, feeling overwhelmed, and sometimes sad. Any advice?? I decided to try "Stress Response" from gaia herbs, but I just got it today, so not sure how that will turn out. BTW, generally if I have energy I am super happy, outgoing, and get tons of stuff done. But when I don't have the energy I am just the opposite.

Oh my gosh! I know the brain fog all too well (something that is so hard to describe to anyone who has never experienced it). First I would say as a general rule of thumb I NEVER EAT AT A BUFFET. And I actually avoid Chinese restaurants all together unless with the excetpion of pei wei and P.F. Changs (which has great Gluten-Free options and they put it on a different colored plate so you know that they heard you). As far as recovery goes I usually have pretty bad symptoms for about two weeks before I start noticing much improvement. Sorry It really sucks! Hope you feel better soon.

I really needed to hear this. I just got really sick from cross contamination. I posted a topic on here and only one person responded and said they never got that sick from cc. Since I am self diagnosed that made me wonder if maybe I was wrong about the whole thing. I keep fretting about it. But then I read these posts and once again felt like I was reading something I had written myself. To answer the topic question... what happened to me was that I ate at a BK and got horribly cc food. I watched them make it, but thought, surely it won't hurt me that much. Boy was I wrong. I ate the food on 5 days ago. The next day I thought I had the flue I had a horrible migraine that lasted two days, and every time I eat I get a little headache, stomachache, and feel nauseous. It sucks! Such is life, I suppose, but a huge thanks for everyone who has responded, because I at least have peace of mind! Megan

"Pre-shredded cheese, frozen french fries, teriyaki sauce, salad dressings and soy sauce may all contain wheat or gluten, according to the Food Allergy Gourmet" http://www.livestrong.com/article/242570-list-of-foods-that-contain-wheat-gluten/ http://www.gluten-free-gluten free.com/celiac_disease_food_additives.htm This site says that all anti-caking agents are now gluten free. I know I read something about the preshredded cheese, but I can't find it. I don't usually believe things unless they com from a reliable source, but like I said I can't find it.

I don't know if this will help you at all, but personally I like to go bowling (I'm not very good though). I think it's a pretty fun way to get to know someone new. You still have something to do besides sit and stare at one another through awkward silences. Hiking is also fun, and if you have a dog, I have found that dog parks are a great way to meet people and all those friendly furry puppies tend to make me feel all warm and fuzzy. lol. If your in a big city there may be a page on facebook of things to do. There is a really great on for Nashville. Good Luck!

My husband and I traveled 17 hours away from home for Christmas and were gone for a week. I did great staying on my diet until the very last day. We were on our way back home and had been in the car for 9 hours and I was quite hungry. We decided to stop at BK. They are fry their fries in a designated fryer, I also figured I could get a HB with no bun. Well this place was absolutely disgusting (it was one in Memphis, Tn.) The workers made a huge fuss about "What!? A hamburger with no bun? They don't want a bun? How are we supposed to do that?". I was watching as they made the burger and realized it was going to contain gluten from the obvious cross contamination. But when you've been on the road for 9 hours and your hungry you sometimes make bad decisions. Which is what I did:( It has been 4 days since I ate that dang thing and I just don't feel much better at all. Really bad nausea, headaches, upset stomach, and a terrible brain fog set in today, I'm tired, and I have no energy. Every time I eat I get nauseous and my headache comes back. Has anyone else experienced this? How long did it last? Any ideas on how to recover more quickly? Thanks, Megan

I hate the brain fog thing- and you end up sounding like a crazy person when you try to explain it. I have noticed that every time I experience symptoms like this I have been glutended. For example I had been feeling great, then all of a sudden lost my energy and felt nauseous. I didn't think I was eating any gluten, but then I found out that pre-shredded cheese often has anti-clumping agents in it made from wheat. If I start feeling bad I try to pacloser attention to what proccessed food I've been eating and research it further. I would be very leery of special diets like the Adkins diet unless you talk with your Dr. about it first. Fruits and veggies to amazing things for your body and by eating a variety of them you are more likely to reap the benefits. The Adkins diet, unfortunately, cuts out a lot of natural goodness from fruits- BUT it does help to recognize that there are good carbs and bad carbs and stay away from the bad.